First the good news: Ethan’s scans were clean! So that’s 2 down, and just a hundred-something more to go in his lifetime. ;-) He has also grown a TON! He’s now up to 16.7 kg (36+ lbs), which is a gain of 4 kg (almost 9 lbs) from his lowest weight during treatment. His Oncologist was hoping for more, but Ethan and I were both very pleased with his progress. He’s also now 41.5” tall. In the world of Hershey Park, this means that by next summer, he will probably graduate from being a Hershey Kiss and be a full-fledged Reese’s Cup.
We also took advantage of the anesthesia during his MRI last week and drew blood (by the nurse’s count – about a gallon) to test his immunoglobulin levels. While his white blood cells rebounded in June, the antibodies that are stored in the bone marrow don’t always make a full recovery. Oncologists like to test this at about 6 months post-treatment to ensure that his basic immune system is what it should be. Ethan’s results showed that he has lost his immunity to polio and chicken pox. The Diphtheria and Pertussis were uncertain, so we will repeat those during his next MRI sometime in March before taking action. Ethan needs to have the polio vaccine re-administered immediately, while the chicken pox can not be done until he’s been off of treatment for 1 year. In the interim, we’re under strict orders to withdraw him from his pre-school if even a single case of chicken pox is diagnosed. That was more or less the agreement I had with the Director anyway, so this was not a surprise to us.
We also tried to do some of the neurological testing, but Ethan was much more into trying out his new sense of humor then participating in the tests. Dr. Horn finally gave up and gave him a big hug, but asked to see us in 6 weeks to re-visit the evaluation.
We finished our evening with a social visit to the hospital. Ethan raced down to radiation first, and then enjoyed some pizza for dinner. The Pediatric Oncology group had their Holiday party in the Physician’s Conference Center, which adjoins the hospital. There, Ethan ate more pizza, at least 3 cookies and had a great time playing with all of his old friends. He put out fires with his little friend Brian, played tag with little Laura and Lizzie and danced up a storm with a few of the more rambunctious ones. I was thrilled to discover that two of the kids, Lizzie and Aaron, have both ended treatment since we saw them last and are doing terrific. I also saw hair on some kids that I’ve never seen before, which was kind of neat. We were also very tickled to see our good friend, Michelle, and our newly-diagnosed friend, Ryan who had just been discharged from the hospital a few hours before. I just can’t tell you how nice it was for both of us to see all of the kids and their families again.
The rest of our month has been busy getting ready for the holidays and happily party-hopping… which wasn’t really possible last year during this time. Ethan helped decorate the tree, and Kyra’s been doing her best to tear it down. It’s a very delicate balance. Ethan has asked Santa to bring him a banjo for Christmas. Yes, a banjo. Santa’s reply was “Wwweeeelllll, its sure been a long time since a little one asked me to bring him a banjo!”. Let me tell you that there are no banjos to be found ANYWHERE in the DC area. I’ve found a few real (read *very expensive* ones), but nothing appropriate for a soon-to-be 5 year old. If anyone runs across one in a store, please call me immediately! I’m in a bit of a bind…
On another note, we had some medical excitement last week and oddly enough - it wasn’t Ethan. Bert suddenly became very ill late Friday night but refused to let me take him to an Urgent Care center. I called the advice nurse from our insurance line – hoping she would side with me – but she took it to the next level and instructed me to hang up and dial 911. YIKES! It was the middle of the night with a huge snow storm. Does this sound at all familiar?? Well, Bert threatened to divorce me if I called an ambulance, so having since purchased a 4-wheel drive, I quickly took him into INOVA Fairfax where we spent the next 12+ hours in the emergency room. Bert was loaded up with Morphine and snoozed nicely for a lot of the night while I sat in a very uncomfortable wooden chair… grumble, grumble. All nighters sure don’t seem as fun as they did in college… Anyway, after a CT Scan and a spinal tap, they diagnosed him with meningitis, although luckily it was the viral variety rather then bacterial. Bert’s doing much better now and bounced back from the virus faster then I did from my all-nighter.
We hope to not have any more news until January, when we’ll follow up with his neurological testing. In the meantime, I hope everyone has a fabulous holiday season. As always, thank you so much for all of your thoughts and prayers. They seem to be carrying us a long way so far.
Warm Regards,
Kim.